I'm posting here to see if any of the health professionals or other users of this forum have ever heard of a rare heart defect that my infant son was born with. Based on our research it appears that he may be only the third person diagnosed with this...ever. We are trying to find information from anyone that MAY have heard of it as there is very little information regarding it.
My son was born with his pda open (which closed around 5 months of age) and an ASD (hole in heart) which has also closed, however more puzzling is that he was born with no right superior vena cava. His left is still open and pumping the blood for now but my worries are that it will close or become narrow, and then what? He is already having issues with blood flow, purple hands and feed and was recently hospitalized for severe anemia and swelling in his legs. I am very worried.
We have reached out to Boston Childrens and Philadelphia Children's Hospital but have not heard back yet. Our specialists here in Florida have never heard of this and cannot provide us with any information.
Any thoughts, ideas, experience, etc is greatly appreciated.
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